Denial is a way of life for me. I’m not in pain. I didn’t get sick twice last night. I can make it through the day. I’ll be fine. I don’t need help. I could go without my medication today. I don’t need a doctor. I’m good. Today is going to be better. I'm fine.
When does positivity turn into denial? Am I lying to myself when I think, “You can do it, just keep on going.” Or am I just staying upbeat? Where is the line drawn? Call it mind over matter if you want. I’ve always felt uncomfortable with that expression.
More than anything, I want a place where I can talk about my disease. No one talks. Denial is not just internal, it is forced on you. We all do it. When someone says, "It will just make you stronger in the end!" they negate and deny what I go through everyday. There is no end. It's chronic.
You blame me for my disease, blame me for letting it get this bad, when at every turn you are denying me a place to talk about it. How messed up is that? I'm starting the conversation now. All I ask is that you listen. I expect nothing else. I need time and an open mind. I don't need you to make a sad face or offer solutions. I know your intentions are good. I know you care, and I can not tell you how much that means to me, but set that aside for just a moment and let me just talk. This is me, claiming responsibility. I have a disease, I will always have a disease, I am just trying to make it through the day, and all I need is to be able to communicate my experience.
These are some bits and pieces that I've written over the last year or so. Most of them were written as a tool to help me choreograph my capstone project for the dancemaking half of my degree. I think they pretty much speak for themselves. I do want to say, though, a couple of them seem rather accusatory. I'm not apologizing for this, because it is the way I felt, and still feel a lot of the time. I just want to say that my message is aimed at our culture as a whole and the way we are taught to deal with disease. I am constantly told (if not explicitly, then certainly implicitly) to keep my disability to myself. The woman at the Services for Students with Disabilities Office told me, "You're not disabled, you're just differently abled."Let me say that again. The woman working in the Services for Students with Disabilities Office denied the use of the word "disabled". She said it with a big smile on her face, clearly thinking she was being progressive and understanding. I just smiled back meekly and nodded. Inside I squirmed. I have worked long and hard to be okay with my disease and my body and the debilitating effect they can have on my life, and this kind of rhetoric is the reason I had to work so hard at it. We are simply not okay with disease or disability, and we do not want to hear about it. We do not even want to say the word, and so we come up with clever little turns of phrase that, on the surface level, sound affirming, but in actuality serve to ignore the disabled body. And the diseased or disabled know better than most, not thinking about something just makes it worse.